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TinyTreasures

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Everything posted by TinyTreasures

  1. Have you done or would you do the Cunningham Panel? Anyone get a normal/non-PANDAS result? My husband and I just decided we should get it done to rule PANDAS in our out for our 3.5 year old, but I am really scared of a false negative result. If you did decide to do the Cunningham Panel and got a normal result would you rule PANDAS out?
  2. So I am bummed - our appt with Dr. Alarcio was supposed to be this Monday, but I was just reminded that it was rescheduled for July 15th since she is recovering from surgery. I just forgot to erase the first appointment in my calendar. I was planning on doing the Mycoplasma, MTHFR, and Lyme bloodwork Monday and also asking Dr. A about my 3.5 year old's sudden onset of STUTTERING which is getting worse and worse. Tonight it took him like 10 tries to get the word "Mommy" out, and this is a child who was saying 250 words by 16 months! What in the world is happening? Also, there are times throughout the day when he doesn't stutter whatsoever - like if he is really into playing or acting out a character. But 2 seconds later if he switches out of that character and acts me a question or tells me something he stutters horribly. He's had some speech issues with relapses before where he couldn't find the words to say or speak sentences fluidly and he would get so angry, but this stuttering doesn't seem to bother him at all..it seems he doesn't even know he is doing it. He has been on Augmentin for 30 days now (Zithromax and Keflex before that but they didn't work) and it is DEFINITELY working for him - he is way better than before, but still not completely himself and still has some tics and fears and sensory issues and now the stuttering for almost 2 weeks now. He also is coming down with his first cold in months and I am so scared as any little cold before would put him back into a full relapse. I can already see some signs - he made us cover up the smoke detectors today because he was scared of the blinking light. Plus he got a bad bloody nose and that seems to happen whenever he is getting worse again. I can't see waiting 3 more weeks to get some answers, that seems like an eternity away.
  3. Once again thank you all for your posts! Yes it has been a super hard struggle with my DH not believing a virus could cause mental symptoms. He would always smirk when I mentioned PANDAS and I even felt I was literally going crazy myself and maybe it was all in my head on so many occasions. It was finally just after this last improvement and then relapse that my husband FINALLY acknowledged it wasn't poor parenting or just the "terrible 3's" but something our son could not control. I am cautiously optimistic that the Augmentin is our key for now. Our little guy seems mostly back to normal still and this is the longest stretch since the last time we used Augmentin. The look in our son's eyes is him - he is completely THERE, not far away or someone else entirely. I called Dr A back and Nora said it would be fine to split the dosage 2x a day. Yay! It is so great to have a Dr who gets it. Thanks everyone for the explanations on the Cunningham test. I am going to call them for more information. Anyone try Homeopathic Doctors? There is a Homeopathic medical group on AZ that specifically treats PANDAS and Sensory Disorders (our son also has SPD which has become much worse with PANDAS).
  4. ps - my precious little boy was off the walls happy last night until right before he fell asleep, he started calling himself "Stupid" again. This morning he was in his bad mood again but trying to get out of it. He wanted me to do something funny that he always cracks up about in the past and I was doing it, and he was getting so frustrated because he couldn't laugh about it and even said "It won't let me laugh". Fortunately a little later on he became much happier again. He has had a lot of mornings the past 19 days that are really bad, and then by lunchtime he is back to happy again and even continues to have excellent days. Can that be because the Augmentin I give him at 9/10am kicks in?
  5. Hello - thank you all SO much. I have been so overwhelmed for the past 7 months with basically no one to talk to about this that it is a relief to finally hear from so many people who are so knowledgeable - I appreciate this very much so thank you! We see Dr A for our first followup visit in 13 days. We are definitely considering the Cunningham Test but does anyone know how accurate it is? My fear is getting a false negative - my husband has a hard time believing PANDAS even exists (just finally starting thinking that may be it this past week) so a false negative would be horrible. We have tried ibuprofen - he was on it for like 7 days at the beginning of this treatment and it didn't seem to make a difference unfortunately. I called Dr. A about having him take the Augmentin 2x a day instead of one 250mg/5ml once a day in the morning. I read that it is out of your system within 10 hours, so that means he has 14 hours without protection?! Wouldn't that give anything bad in his body 14 hours to come at him again and isn't that dangerous in possibly causing him to become resistant to Augmentin? Well her nurse said to give it 1 more week with the 1x a day doseage and update her then. I don't think she asked Dr A about it. If she did want me to split the dosing would that mean just halving it and giving it twice, so 2.5ml twice a day of the same 250mg prescription? Another week on the wrong dose of medicine seems risky. We are on day 20 already and had a bunch of amazing days, and the past 3 have just been decent - about 75% back to normal. I can't help but wonder if doing Augmentin 2x a day would be the boost he needs to have those amazing days back again.
  6. peglem - yes I would like to join both groups! Thank you for the advice on the bloodwork. I think I'll get the copies from her office at our appointment this month. Glad to hear from someone else in AZ! At the beginning of all this I thought it was a parasite, but we did a bunch of stool tests and they all came back negative. I put him on VitaKlenz for 30 days but it didn't seem to do anything. I am going to do the 23andMe test for sure. We did 2 weeks of Azithromycin at the very beginning of this 70+ day of antibiotic treatment...it didn't seem to work - we had 4 good days on it and 10 bad days. I am hoping we've found the right antibiotic now - Augmentin brought my son back in January after a very long horrible relapse...it took me 2 months to convince his pediatrician to try it, and finally after he got the flu she prescribed 10 days. Within 3 days he was starting to come around, after 5 days he was almost completely back to himself! He stayed pretty good - ups and downs but nothing drastic until he got a cold a few days before our appointment with Dr Alarcio. We are now on day 19 with Augmentin and had 15 good days in a row (several of them I wrote in my log "Amazing excellent day!") We just got over having 2 very difficult days but as of yesterday he has been getting much better again. I just looked at my log of symptoms and 19 days ago he was doing so bad - horrible mood, acting like a "villain" or "naughty guy" much of the day, obsessively repeating nursery rhymes for 1-2 hours at a time, bad words, and he did seem to be having auditory hallucinations. Right now it is 10:30pm and my son is bouncing off the walls. He took a nap which he never does, but he is SUPER happy, overly happy. Talking so excitedly and running around the house HAPPILY playing a "naughty guy and good guy game", laughing, being NICE, he has not said a bad word or called us or himself or other kids stupid since around lunch time. When he is doing bad he adds "poopy dum dum" or something like that to the end of many of his sentences for no reason. Calls himself Stupid when he sees himself in the mirror. Screams at us for even saying Hi to him. I am hopeful this is a big piece of the puzzle in my son's recovery and anxious to do the other tests you all have recommended. One more thing. At 2.5 years old we noticed a Lipoma on his chest. This was right around the time all this started. It definitely has gotten bigger over the past year. Is there possibly any link? I know it isn't common for a toddler to have a Lipoma, and I've read there are often more than one. What if there is one near his basal ganglia that we can't see? I am going to call Dr Alarcio and see what she thinks.
  7. THANK YOU all so much for your posts, I am taking them all in and taking notes and reading the links. In my heart I know this must be PANDAS or PANS but sometimes I wonder if that triggered some other sort of mental thing. His change back in October was so severe and sudden. Now today (as each week varies) compared to back then he is actually WAAAY better - not nearly as much OCD, not as many rages or fears, no screaming nightmares, not as many tics, we can go places now without him clinging to me terrified except instead of being scared to death of other kids he is now in "fight mode" where he yells at them, calls them stupid, or at best GLARES and points at every child he sees. A few weeks ago if we went out somewhere he would actually SCREAM "Stop It!" to every single child he saw, just because they looked at him. He simply is just not my boy - the boy I know is in there because he returns to himself over and over again, and then I lose him again. He hasn't been sick that I know of for 70+ days since we started antibiotics, but has still had so many relapses which makes it so confusing to us. At the beginning he would get better and then after an illness take a dramatic turn for the worse. Now it seems random. We are seeing Dr Alarcio - the only PANDAS specialist in AZ but it takes months to get in and then months for our first followup, which is finally coming up at the end of June. You all have convinced me to get the bloodwork done. My precious boy asks me every single week still if we have to go back to the "pokey Dr" so it breaks my heart, but we need to know what is going on. We did use EMLA but the 3rd time it took 1.5 hrs to get in and had worn off and they had to poke him twice, it was terrible. Our Dr ordred a TON of bloodwork but I know she didn't test for Lyme (we live in AZ) and the MTHFR and Mycoplasma tests were messed up in the lab - they marked the wrong codes. I still haven't been able to get a copy of our tests results back - the nurse just told me over the phone that everything looked normal. But from our bills (and they keep on coming) the tests she ordered were: Vitamin B-6 Deoxyribonuclease Antibody Comprehensive Metabolic Panel Agglutination Test CBC with WBC Cytopath C/V Auto Fluid Review General Health Panel Assay of Folic Acid Serum Assay of Ferritin Assay of total Thyroxine Assay of Thyroid C-Reactive Protein Immunoassay Infections Agent Vitamin D 25 Hydroxy Influenza Virus Antibody Vitamin B-12 Agglut Antibody Titer IGG Antistreptolysin Titer Assay of IGA/IGD/IGG/IGM Epstein-Barr Capsid VCA Homocysteine CMV Antibody IGM Assay of IGE Epstein-Barr Nuclear Antigen Deoxyribonuclease Antibody Assay of Iron Since we have to redo the MTHFR and Mycoplasma, are there any other tests I should ask to have done at the same time? Currently my 3.5 year old (30 lb) boy is on 250mg/5ml of Augmentin ONCE a day. Should it be twice a day? Would the 23andMe spit test detect a CBS mutation like your son had LLM? Should I order that test now or wait until after the bloodwork results? Could we try supplementing with methylfolate right now or would that be bad for him if he does not have an MTHFR mutation? Would it mess up the MTHFR bloodwork results? Thank you everyone again. My sister does have Bipolar Schizophrenia but I don't want go to that route....I just want to help my precious little boy get back to where he used to be.
  8. My precious 3.5 year old son has been tormented for nearly a year now. A year ago he suddenly developed a tic - "picking" after an illness - he had 20+ scratches all over his face for over 2 weeks, and his personality changed 100% - rages, extreme irritability, no longer would go potty or take baths, etc. After 3 weeks and lots of allergy medication from his Dr which didn't work, I put him on Probiotics 5x a day and he improved instantly. 5 months later he got sick with a cold and he started having several tics and his mood changed once again so that he was unrecognizable as the same child. Meltdowns over everything, sudden OCD, strange statements, major separation anxiety, major anxiety around other kids, etc. I wrote everything down because it was so drastic and I have over 60 pages to date, so this is a VERY brief summary. He was diagnosed PANS by a Neurologist over 70 days ago and has been on antibiotics since. All bloodwork came back fine, but the lab messed up the MTHFR and pneumonia mycoplasma tests and couldn't give us the results, and after 3x giving blood in 5 days my little guy could not take one more prick so we haven't gone back. I am so confused though - before his diagnosis I was 100% convinced this was PANDAS/PANS but now I have no idea if it is or not. The first 2 antibiotics Zithromax and Kelfex didn't seem to do anything so I asked his Dr to try Augmentin, which seemed to work once before several months ago. I thought we had found our answer! Within 5 days MY BOY WAS BACK - 95% himself and better than he's been in a long time. But I am so devastated, after 15 good days it is all coming back - his obsession with everything evil and bad - always being the villan and talking about killing, talking about hurting kids and saying all kids are stupid and dumb, calling himself stupid, saying he is not himself but that he is the Naughty Guy or someone else bad, saying bad words including the occasional f word, rages, irritibility, crying, tiredness, extreme sensitivity to smells and sounds, loss of appetite. He does not even talk like himself - he talks in a lower meaner tone of voice and his eyebrows are often furrowed. And he also just started stuttering out of the blue today. He's seen a psychologist 5 times and she thinks he is hallucinating - hearing voices - because of things he talks about (at home, he does wonderful during Play Therapy), but after talking with his Neurologist she believes it is all from the PANDAS. If not PANDAS she thinks possibly Bipolar. I thought PANDAS should clear up during antibiotics! Since he has been on them he has been: Started Zithromax: 7 days bad 4 days good 2 days bad Switched to Keflex: 5 days bad 8 days good 2 days bad 1 day good 3 days bad 7 days good 13 days bad Switched to Augmentin: 15 days good 2+ days bad On his excellent days he is 95% back to normal, and on his bad days he is not even the same person. Please anyone, I just want to figure out what is going on so we can start giving my precious little boy the help he needs! I feel like his mind is tormenting him and I am failing him as a mom because I can't figure out why.
  9. My son is 3.5 years old has had maybe 4-5 PANS relapses and as many remissions. What are remission and relapses like for your child? It seems like ours are almost instantaenous - like a light switch being flipped. For instance one time when a relapse had been going on for weeks he was raging over his bath toys getting wet - he wanted to play with them in the bath but dry each one off after it got wet. Literally 20 minutes later he was noticeably different, and the next night (and from then on) he had no problem with his toys getting wet. That is just an example of so many scenarios - he will go from bad language (one of his OCD's or tics) to suddenly saying please and thank you and being back to his polite sweet self. From yelling at his baby brother and wanting nothing to do with him to singing songs to him and smiling at him and being the sweetest big brother. Stuff that makes me raise my eyebrows in disbelief how fast it changed. The tics usually linger on, but his personality change is fast and drastic. It is the same way with relapses - he'll be my sweet typical boy and then out of the blue ask one of his strange sentences or have that look in his eye or start saying bad words and I know its not him anymore. What does remission look like for your child - instant or gradual?
  10. Anyone experience this when your child has a flare up - my 3.5 year old actually BECOMES (and believes he is) someone else, always someone "naughty". He literally is not like himself anymore, and if you call him by his name he screams at you that he is not (his name) he is _____ - in the past it has been Captain Hook, a Pirate, a naughty Robot, and now The Naughty Guy. When you say "Oh you are pretending to be "The Naughty Guy" he screams that he is not pretending, he IS the naughty guy. This naughty guy my son becomes is aggressive, does not listen whatsoever, and is absolutely horrible to other kids, moreso with perfect strangers - screams at them, yells "Stop It" if he even sees a child, rages, cannot be reasoned with at all. He has been on Keflex now for about 2 weeks and had been 95% back to his wonderful sweet self for 10 days in a row, but this morning at a playplace he saw a semi-violent video game and suddenly "I am the Naughty Guy" and snapped back into his role as the Naughty Guy 100% for about 20 minutes - it was horrible, and my sister (who we'd come with) was dumbfounded, never seeing him like that before. He only snapped out of it when I let him watch Humpty Dumpty (his latest obession) on my iPhone, then he became Humpty Dumpty for the rest of the time there - a much nicer character. When we left and said bye to my sister & niece - the people we met there and hung out with the entire time, he gave them a hug, we walked 10 steps to our car, and he said "Who did we just play with?" like he had no idea. I said "You know who, who did we just say bye to?" and he said "Emma?" (another of his friends who wasn't even there!) I asked him again and after some thought he remembered our relatives. Now at home he is back to his sweet self, not pretending to be anyone else. Quite a few times recently he's asked where we are going even though he was talking about it minutes before, asked what he was just thinking about, what he was just eating, where had we just come from, etc like he can't remember. He often acts like someone else (although insists he is not acting), but when he gets a cold/flu/virus/etc it is ALWAYS someone "naughty" and he always has a name for them. And he starts calling himself Stupid - "Stupid (his name)". (This is just one of his symptoms - I wrote more about his other symptoms here: http://www.latitudes.org/forums/index.php?showtopic=20303 ) My husband and I even mentioned the thought of "split personality" today - our son was COMPLETELY different yesterday. Please, does anyone have an idea or know if this sounds like PANDAS? So desperate for our son back.
  11. My 3.5 year old was just diagnosed with PANS & is on week 3 of antibiotics. Life is good finally - my sweet boy is mostly back to himself & I hope I never lose him again! He had all his vaccines up until 2 years old (for some reason I just had a bad feeling about getting his last doses of vaccines & kept putting it off). We spaced them all out & he never got the MMR or flu or Chickenpox vaccines & I don't want to give him any more ever. I can't see it making sense to purposefully put diseases in the small body of someone with an autoimmune disorder who can't even fight off a cold without it attacking his brain & completely changing his personality. My question is this - did or would you vaccinate the siblings of your PANDAS child? My 2nd boy is nearly 3 months old and vaccine-free...I just am wondering if there are any vaccines which are truly important that I should give him? I can't bear the thought though that something I choose to give him may change his life horribly someday...
  12. Yes, the cream is called EMLA! My 3.5 year old had to have blood drawn 4 times over the past several months. The first 2 times he just sat there happily and ate a candy bar - the cream works wonders.The 3rd time the nurse said "just a little poke" which freaked him out a little even though he couldn't feel anything, but he still did great. But the next day we had to come back for the last draw (a lot of tests and they couldn't take all the blood in the same day) and he was VERY upset because he remembered what the lady had said about him getting a poke. We had sat 1.5 hours in the waiting room, and by that time the EMLA had worn off so he definitely felt it. It was heartbreaking but I knew it was his last draw and he got through it. Ps - we are on day 18 of abx and just today finally saw major improvement! 13 days of Azythromicin, now day 5 of a 90 day prescription of Keflex.
  13. Thank you for your reply Dedee - I appreciate it and it means so much to me! Yes I guess you are right - I am forunate to have caught it quickly...I usually read about people with kids diagnosed later but saw signs in retrospect of things happening years before. Thanks to the internet and also probably because my 3 year old's symptoms are so extreme - not just some sudden eye blinking that came and went. Picking (20+ scratches all over his face) was the first OCD along with the complete change in behavior. Then 6 months ago basically overnight his personality completely changed again and he started gagging himself, grunting loudly, sighing constantly, and gradually added or exchanged many more tics - jumping, sitting hard in his chair, jerking shoulders, flailing his arm, twisting his head to the side, laying his head on his shoulder, stomping in a certain order, blinking, flapping his hands against his head or ears, pacing, rolling sounds with his tongue, rubbing his cheeks, bad language (including the f word) hundreds of times a day, and more. Those are just the tics - then there are the obsessions, such as having to have his toys displayed exactly like the box shows (if one falls - rage), constantly repeating questions, not stepping on cracks, irrational worries, not being able to "mix" toys he is playing with with toys from a different set, etc. And the huge meltdowns were almost unbearable - over having to take a bath, get dressed, go potty, over not being able to get his clothes on/off by himself, over one of his toys falling over. There were weeks we couldn't even smile at him without him trying to hurt us - punch, kick, pinch, scratch, headbutt, swear. During this last episode my son seemed to become someone else, even to himself. He insisted every day that he was not **** (his name) but he was "the naughty guy" and did all bad things. Everything he talked about or focused on was bad and negative and even scary. He constantly said "Stupid **** (his name)" like he was calling himself stupid, yet didn't think he was himself. He went from telling his 2 month old baby brother he loved him to calling him stupid, constantly yelling in his face, and not wanting him anywhere near him. One of his quotes about his brother was "Mommy you get two pokey toys & I'll get 2 pokey toys & I'll poke baby brother & he'll cry for a long time for fun!" Before today I was 95% convinced it was PANDAS/PANS, but tonight I am 150% convinced. I am so relieved to say that today was our turning point! Apparently Azythromicin did not work for my son, but Keflex is working. We are on day 5, and just like with the Augmentin, almost as fast as he went away, my boy is coming back. Around lunchtime everything started to go back to normal and by tonight he was super happy, jumping, hopping, hyper, talkative, treating us NICE, back to normal with how he treats his baby brother - brought the baby's swing over and said "I brought baby brother's swing over in case he wants to rock in it". Let baby brother “walk” up him all the way to his head and laughed about it - he would call him stupid before and not let him near him. Talking excitedly about how baby brother is starting to hold toys and bring them to his mouth at dinnertime, patted him on the belly and said “I like baby brother”. I felt no fear of my son trying to hurt his brother like I had for nearly 3 weeks since this last episode began. I am so glad I found this forum. No one except me and the Neurologist believes this is PANDAS/PANS - my husband's family thinks it is just "terrible two's/three's" but they only see my son a few hours a week. Up until our visit with the Neurologist my husband thought I was crazy as well and didn't even believe in PANDAS (he'd never researched it at all). However since this last episode he is finally starting to think it could be true. As a mom I know my boy better than anyone - I am with him 24/7 and know his personality! Before this all started he was literally the sweetest toddler boy I had ever met. Very smart and verbal too with definite anxieties, but nothing extreme. This disorder is absolutely heartbreaking. It feels like out of the blue the child you know and raised was replaced by someone completely different! Every morning I wake up with my stomach in a knot, waiting to see if the look in my boy's eyes is him, or if he is fading again. I am praying this 90 days of antibiotics will allow his immune system to heal and he will be back to my boy for good.
  14. My precious sweet little boy is almost 3 1/2 and just officially diagnosed less than 3 weeks ago with PANDAS or PANS. Waiting on bloodwork results. His first episode when he was 2 1/2 resolved immediately with Probiotics 5x a day for many days. I thought it might be a parasite because he was scratching his face so much (now we know it was OCD "picking"). He had a couple more episodes after coming down with colds which Probiotics barely helped, but his pediatrician wouldn't prescribe abx until his 4th episode - a major flu virus. Augmentin cured him 90% within a week and he was good up until his most recent cold 2.5 weeks ago (right after we saw the Neurologist who diagnosed him). He was on Azithromycin for 13 days - he was 95% back to himself by days 8-11, and then back to bad again. On day 14 we started Keflex (Cephalexin) and he is supposed to stay on it for 90 days! Today is his 4th day on Keflex and he is definitely a little better moodwise, but the Neurologist said he should be 100% back to normal including no tics within 3 weeks and that is 3 days away! He is absolutely not back to himself, maybe 60%. How long should it take for the abx to work? Every time he is back to normal I doubt myself that it is PANDAS (I've suspected it for 5 months now - took us 3 months to get in to the Neurologist), thinking that if I had just handled things differently everything would have been okay, but then when he has a relapse I am absolutely positive it is PANDAS - he is a completely different child and even walks, looks, and talks different!
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